I have a question about whether we need to avoid completely covering our symptoms with physical treatments in the same way that we need to be careful about using too much medication.We probably all know that it’s a bad idea to take enough medication to be totally free of RLS symptoms. I have a lot of trouble falling asleep with even a whisper of RLS discomfort, though, so I often try to figure out ways to completely quiet my legs using medication to get myself partway there, and various physical treatments to take care of the rest.

In the very early days of my RLS, I could sleep pretty well with just a 40 minute yoga routine before bed. Soon that wasn’t enough, and I added what became a cavalcade of medications. It wasn’t long before I also needed to use a percussive massager, first for breakthrough symptoms, and then nightly as a necessity. This first phase of my RLS lasted about 9 months to a year.

Some years have passed, and I have recently figured out that adding a heating pad to the mix helps a lot. What I am nervous about is that, like stretching and massage, it will go from a help to a necessity. So I have a couple of questions:

1. Was my early experience with stretching and massage going from helpful to necessary just my RLS ramping up, or is there a danger to trying to cover all of your symptoms using physical (plus some pharmacological) treatments?

2. If there is a danger, would it be smart for me to have a physical treatment holiday, or do some type of physical treatment rotation (e.g. stretch for a couple of days, then massage for a couple of days, then heating pad)?

3. Do we understand why covering all symptoms with medications tends to lead to loss of drug efficacy, beyond just the normal effect of the brain adapting to the presence of a drug? That is, what is special about crossing the line between taking a medication and experiencing mild symptoms, and taking a touch more medication and experiencing no symptoms?

Interested to see what others think. My gut says that it's progression that makes you need more exercise, not tolerance to it. When mine is very mild, such as when meds cover 90%, I can do the same exercises that helped me 30 years ago. I do alternate heating pad, vibrator, exercise, but mostly because I feel like doing different things based on how tired I am. If I am in bed and was in a deepish sleep and I wake up with mild symptoms, I often need to wake up a bit before I can walk without falling - too sleepy. I leave a heating pad and a body vibrator on the bed for those occasions. Sometimes that is enough. In the cold, I don't want to do bed gymnastics, but in the summer, I am happy to do a specific set of stretches and exercises that often work. If those aren't enough, by that time I'm usually awake enough to leave the bed and go downstairs to either stay up for awhile and see if that resolves it, to take some kratom or a MM hit, walk on the treadmill, take a hot shower/bath, or just stay up and be done with it.

mh380 wrote: ... 3. Do we understand why covering all symptoms with medications tends to lead to loss of drug efficacy, beyond just the normal effect of the brain adapting to the presence of a drug? That is, what is special about crossing the line between taking a medication and experiencing mild symptoms, and taking a touch more medication and experiencing no symptoms?

Thanks,

Marc

Marc, I think the rationale behind lowest doses of opiates or gabapentin/Lyrica/Horizant is that higher doses have more side effects and tolerance (with attendant loss of symptom control) develops more quickly.

Dopamine agonists (pramipexole, etc.) are a special case. Our RLS brains have too much dopamine, which down-regulates the dopamine receptors, making addition of more dopamine (via the pramipexole or other dopamine agonists) ultimately counter-productive (augmentation).

Hi Marc, I'll add my two cents in here. I think that "exercise" is good overall for RLS and health and will never lose its effectiveness in that way. But if you're doing activities that cause a "release" of dopamine then in theory, yes, you will need ever increasing amounts of it or find that it loses its effectiveness. Did it ever make you crazy wondering why RLS disappears when you stand and walk? Well it did me. So I researched what happens, brain wise, when we go from a sitting or laying position to a standing one. What happens is that dopamine is released in a nano second. Dopamine is what balances us when we stand and coordinates movement when we walk. So I for one believe that is why RLS is relieved when we stand and walk, but you will never read it anywhere. Fast forward a couple of years and I was standing and leaning watching a movie because of RLS. The RLS was NOT completely relieved. I assumed it was because my brain didn't sense enough of an imbalance. Given all of this I believe that stretching is a waste of time in the middle of the night. Standing on one foot might be a better option or walking heal to toe. The question is, as your balance improves, will your brain release less dopamine? And what about other dopamine releasing activities such as orgasm? I truly believe that if you use orgasm to relieve RLS, albeit temporarily, you will find over time that you may go from 15 minutes of relief (which is enough time to fall asleep) down to 10 minutes then 5 minutes, etc. Hope that helps, and of course, like I said, this is all my theory. However I have gone onto druggie websites, as well as ***** addiction websites, and these people know their dopamine and their D2 receptors. They firmly believe that recreational drugs (and *****) will down-regulate your D2 receptors every bit as much as the dopamine agonists. So, they are always looking for ways to up-regulate their receptors. Severe daily calorie restriction or intermittent fasting is supposed to accomplish this. There's also something they call the "Uridine Stack" that is supposed to up-regulate. Theoretically, anything that up-regulates our receptors should help with the RLS. And I guess anything that "antagonizes" dopamine should up-regulate receptors as well. Fasting is a healthy antagonist. But I bet initially when someone fasts their RLS will go crazy. Melatonin is a dopamine antagonist but not something you want to take at night because it will make RLS much worse as well.

I do not use exercise as an RLS treatment. Based on your question, possibly that is because I run so much that it stopped being effective long before I even knew that I had RLS.

However, this raises a question about the effects of opiates. When running for an extended period of time and at a moderate pace (over one mile at a pace where you can still talk, but near the edge where you cannot), the brain will start to produce endorphins, which are natural opiates. It makes sense that these would have a residual effect on RLS after stopping the exercise. However, as your fitness increases, you have to run faster and longer to trigger the endorphins. After a while, the exercise required stops being a casual run and can start to consume quite a bit of time. So what might start out as a brisk walk on the treadmill while reading or watching TV for 15 to 30 minutes could become runs that last an hour or more to get the same RLS "benefit". Of course, there is also the overall fitness benefit, but that was outside the scope of your question.

And if you didn't already know, I am a competitive runner and compete at distances from 800m to the full marathon.

The lost of drug effectiveness: the drugs never did too much for my symptoms and as the neurologists kept upping the dosage I just felt like a walking zombie. After 2 years of that I reduced the meds to nighttime (i.e. before bedtime) only and quit seeing the neurologist. It was obvious he wasn't going to be able to help me any more and was only interested in collecting a fee for a 10 minute (still doing the same thing) appointments. My normal doctor took over the prescriptions. I now take one 300mg Neurontin and a 0.5mg Cloanzepam in the evenings and manage a pretty good nights sleep.

Honestly though, I think I've just grown accustomed to the symptoms more than anything. I can fall asleep un-medicated and sometimes will make it through the entire night.

I also sleep better now that I quit smoking. No cravings to motivate me to get out of bed now. So I will actually fall back asleep if I wake up early.